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» LymeNet Flash » Questions and Discussion » Medical Questions » Does this sound right?

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Author Topic: Does this sound right?
JenInMa
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Member # 31544

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My 11 year old son was clinically diagnosed with Lyme disease this February. Unfortunately, no lab test to date has confirmed this. He's been on antibiotic therapy for 2 months and his symptoms have worsened:
dizziness, lack of concentration, severe back and stomach pain, weakness
But it's been a gradual decline, not a classic Herx.
Prior to finding a good Lyme Dr. he was diagnosed with Fibromylagia, gastric reflux, and insomnia related to such.
Even our LL doctor said that if he hasn't improved by now, he may not have Lyme but he doesn't know what it is that he does have.
The only irregularity in all of his tests are elevated liver enzymes.
We're afraid that if we go through the mainstream they will stop the antibiotics.
But do now know what else to do. This is a kid that's missed 3 months of school.
Help.
Jeninma

--------------------
IGG 41++, 58+
IGM 31 IND, 41 IND, 83-93 IND

Son (most chronically ill)
IGG 41+
IGM 39 IND, 41+++
Bartonella positive

Daughter
IGG 39 IND, 41++, 58+
IGM 31+, 41 IND, 83-93+

Posts: 39 | From Boston, Ma. | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
Dawn in VA
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Is he on combination therapy (more than one ABX) and is this IV or oral? Just wondering with the keypad here if your LLMD is treating aggressively (enough) or not.

--------------------
(The ole disclaimer: I'm not a doctor.)

Posts: 1349 | From VA | Registered: Jul 2006  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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Have you tried treating for parasites?

Also, check this - http://www.drdebe.com/stomach-acid-assessment.html

These are both issues I had to address. I had acid reflux, but it was due to low stomach acid, not high. Low acid can also cause parasites, which can cause many symptoms.

There are many herbs he can take for parasites. Humaworm. Parastroy.

Unfortunately, testing for parasites is poor. I had a stool test and a colonoscopy, yet none of mine showed up in either test. I had visible worms. (eww)

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
2roads
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Sounds like classic Bartonella which, depending on what antibiotics your son is on, may not be treating it.

Hang in there-
[group hug]

Posts: 2214 | From West Chester, PA | Registered: Aug 2003  |  IP: Logged | Report this post to a Moderator
Lymetoo
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Can you post his test results here? I hope he had a Western Blot test. What you really may need is a Western Blot thru Igenex Lab.

If your dr doesn't use Igenex, then maybe he's not a real LLMD.

It is very "normal" to feel completely worse for months and months when beginning treatment. I had no improvement for about 18 months. Felt like a constant herx.

and yes, he may have bartonella to boot

More info here:

Quick Links to Popular topics:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95817 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
JenInMa
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Hi. My son tested slight positive for Bartonella in February and was treated with Minocin. More recently, his test results came back negative for Bartonella.
Otherwise, he's on oral 1,000 mgs of Amoxycillin and Azithromycin per day.
He was also prescribed Tindomax but we've only managed to give him two doses as he became so ill on it and he's already in so much pain and discomfort.

We have to decide if we should take him to our local Childrens Hospital or stick with this.
Any advice is appreciated...
Thanks,
Jen

** edited to remove dosage of zith, but left dosage of amoxy for discussion purposes, please see Loub's post at top of medical regarding posting dosages **

[ 04-25-2011, 06:07 PM: Message edited by: sixgoofykids ]

--------------------
IGG 41++, 58+
IGM 31 IND, 41 IND, 83-93 IND

Son (most chronically ill)
IGG 41+
IGM 39 IND, 41+++
Bartonella positive

Daughter
IGG 39 IND, 41++, 58+
IGM 31+, 41 IND, 83-93+

Posts: 39 | From Boston, Ma. | Registered: Apr 2011  |  IP: Logged | Report this post to a Moderator
lymeboy
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Personally, I think the tests are pretty useless. Many people with Lyme and coinfections continually test negative. If you haven't treated for Bartonella, it is likely it did not go away. For Bart, levaquin / Factive? Cipro seem to be the best treatment with the fastest results. I have been taking Cipro for 5 months and the improvements have been drastic. and Cipro is the weakest drug in this family....he will need to take a lot of Magnesium Glycenate at the same time, to avoid tendon ruptures.
Would it be a possibility to see a new Doc?

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Shahbah
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Jeninma, first of all, what made you think your son had lyme in the first place?
My guess is that your son has problems that orignate from his stomach... How was his Fibro diagnosed? How did all this start? Was he in an accident? Did he have mental issues?

Posts: 723 | From Montreal | Registered: Oct 2010  |  IP: Logged | Report this post to a Moderator
Lymetoo
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You said he was clinically diagnosed for Lyme, so I was wondering what his western blot looked like. Which bands?

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95817 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
sixgoofykids
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quote:
Originally posted by jeninma:
Hi. My son tested slight positive for Bartonella in February and was treated with Minocin. More recently, his test results came back negative for Bartonella.

One month isn't very long for treating bartonella and usually it's treated with rifampin or levaquin. I don't know that mino reaches bart (it didn't touch mine at all). Testing is for antibodies so can only be used to confirm diagnosis. He had a positive test, so you know he's be exposed.

Since you know he's been exposed, according to my LLMD, from then on you treat based on symptoms. It sounds like bart is still a distinct possibilty.

I would also read on the forum about parasites. You may also look into dysbiosis of the gut. Many of us have problems with these two things in addition to the Lyme (and because of the Lyme/treatment).

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
t9im
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Hi Jen:

Our now 11 yr. old daugher has been on mepron/zithromax for 13 months - zith alone has not been proven to be adequate anainst Lyme and this is for her babs.

She was on Tindamax, started slowly the first week then two days / week which she tolerated well (except for an apparent loss in appetite we didn't notice till later).

After 4 months we more than doubled the Tindamex dose (3 days, twice/day) but had to stop due to itching. Reduced back to the 2 days once per.

We attribute the Tindamax to a marked improvement in the Lyme symptoms. We did have to take her off of it (we managed the itching with other meds -Zirtec) but she was becoming anexoric and we stopped.

We didn't believe she had Bart but now are not sure.

Note she has always been negative for the tests, the best was 3 positive bands one time via Igenex.

--------------------
Tim

Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
   

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